Devastating reality: “Eventually, they are going to have to say goodbye to their son”

Tommy and his family.
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The community is being asked to rally around Cambridge Gardens schoolboy Thomas Adams-Bennett in his battle against diffuse intrinsic pontine glioma (DIPG).

The eight-year-old, fondly known as Tommy, was diagnosed with DIPG – an aggressive type of childhood cancer that forms in the brainstem – last year at the age of seven.

Since then, family friend Karen Peebles said that those around him have seen great shifts in what’s considered to be his ‘normal’.

“He’s gone from being incredibly active, going to school and seeing his friends, and playing and laughing and eating and walking and all those things that every child should be able to do, to now… not even being able to talk,” she said.

“Whilst he does giggle at some things, he’s struggling with that communication, he needs 24-hour care, he can’t walk, and he struggles to eat.”

For Tommy’s mums, this has been heartbreaking.

“They’re watching him deteriorate from being really happy and outgoing, to not finding the joy in the things that he found joy in before,” Peebles said.

Over the last eight months, Peebles said she’s just been one of many friends and community members who have rallied around Tommy and his family, with some hosting a Bunnings BBQ late last year, and gifting them objects and holidays to allow them to spend time together.

With DIPG Awareness Day today (Friday, May 17), she’s decided to set up an awareness walk around the Nepean River on Sunday, May 19.

Peebles said another friend has made Team Tommy shirts and jumpers, and is hoping that those who see the group walking will stop and ask questions.

“It would be nice to see a river filled with Team Tommy merchandise, and we’re more than happy for people to stop and ask us who he is and why we’re doing it,” she said.

Peebles assured that the walk is a public event, and is hoping to see as many people as possible meet them at The Coffee Club at 10am.

There will also be another event being held at Big Swing Golf in Penrith on Saturday, May 25, aiming to cover all bases when it comes to funds and awareness.

“They’re going to do raffles and things there as well, so it will be more of a fundraising event for the family, whereas the walk, whilst we’ve attached the GoFundMe page to the event, it’s more about the awareness itself,” she said.

Peebles said that she’s hoping to see as many people support the cause as possible, not only for Tommy, but for every child who has or will be diagnosed with DIPG, which has a median survival time of less than a year from diagnosis.

“Eventually, they’re going to have to say goodbye to their son, and I don’t know how you do it. He’s got an older brother who’s my son’s age, and he’s got to prepare to lose his baby brother, because sadly that’s the inevitable,” she said.

“It’s wrong, it’s not fair, and I think there needs to be more research in it in Australia.”

For more information about the walk, visit bit.ly/3UV4vP3.

For more information about the golf fundraiser, visit bit.ly/3WEfwWc.

To donate to Tommy’s GoFundMe, visit bit.ly/3K1XoOC.


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